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        New Message Board Archives >> Jul-Sep 2003 >> Help!!!  I'm Not Living
        
(Message started by: screamer on Jul 21^st, 2003, 10:52am)

Title: Help!!! I'm Not Living
Post by screamer on Jul 21^st, 2003, 10:52am

I am not living I am just existing, and waiting for the next HA to occur, Made my first post on July 18th because I had suffered in pain from the 15th, guess what? Spent the entire weekend in ER, Ironically, I had a revelation due to this HA, I am , in fact, having both CH and Migraines, I am now positive. In need of a neurologist in Mississippi, does anyone have suggestions, Or close to Mississippi. I am willing to go anywhere in the neighborhood, I have cried myself senseless, I missed my twins birthday celebration due to HA's I feel useless and I feel like giving up. Can't explain the pain, not accurately anyway. I fell on my knees and pleaded with the nurses to help me, and they insisted I take yet another CAT scan that again came up normal, more $$$$$$$ that I don't have, ended up getting another shot of Nubain, DR confessed there was absolutely nothing else he could do for me, referred me to Ruth Fredricks in Jackson, MS but b/c my primary DR is on Vacation was unable to schedule as intended. I am non-functional, tired of being that way. Is there anyone out there suffering from both of these beast, please find me, love to chat

Title: Re: Help!!! I'm Not Living
Post by Gofishgriff on Jul 21^st, 2003, 11:17am

Hang in there Screamer. Sorry to say I don't suffer from both, but I do know what you mean when you say you are not living.

I feel fortunate only being episodic. However, when I'm in cycle, I know how debilitating these HAs are. Although it doesn't shorten the length of the HA, I have found ice packs to help dull the pain somewhat. I'll move it around from my eye, to temple, to head and so on. I can't speak for some of the other drugs mentioned on this site, only Fiornal. (Fironal does not work for me!)

Hang in there. Wishing you PFDAN's.

Gofish

Title: Re: Help!!! I'm Not Living
Post by Karla on Jul 21^st, 2003, 11:29am

Yes I suffer from both chronic clusters and migraines. I am on disability because I couldn't live my life and was just existing in pure hell. I found it impossible to work, garden, play with children, do anything worth something was impossible. I can relate to what you are saying even missing my twins birthday because of ha. It sucks.

Title: Re: Help!!! I'm Not Living
Post by forgetfulnot on Jul 21^st, 2003, 12:07pm

Here is a post from the med board that might? help,

Quote:

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.

------------------------------------------------------------------------ --------

Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.

Logged

--------------------------------------------------------------------------------
Bob Johnson

And I thought I had problems :'(

Lee

Title: Re: Help!!! I'm Not Living
Post by Hooter on Jul 21^st, 2003, 12:36pm

Screamer
As I mentioned in your previous post, I get both migraine and CH, and there are several of us here (mostly women I think) who get both.
It's a bugger, because even if you are an episodic Ch sufferer, you still get headaches between cycles. In my case as I said before, the migraine is hormone related (ovulation or premenstrual) but the CH has no pattern other than seasonality for me it seems.

I would be stunned, shocked and gobsmacked if you can't knock the migraines out pretty quickly with one of the triptans (e.g. Zomig)

The CH, now that's a different story. There are many, many different things people here can recommend you try, so read, read read and ask questions. Crucially, the advice would be to make sure you have tried the main treatments AND USED THEM CORRECTLY before you give up on them (e.g. O2 at the right flow rate, Verapimil at the right dosage, Imigran/Imitrix at the right time and right dosage) there are others which people here will fill you in on e.g. Lithium etc but I can only talk about the ones I have tried.

You can manage this thing and have a life with help and support, and you've come to the right place if you have CH.
It might be a good idea to clearly itemise again what you have tried and failed with, so people here have a better idea of where you are at.

Hooter

Title: Re: Help!!! I'm Not Living
Post by stevegeebe on Jul 21^st, 2003, 12:45pm

Screamer,
Is New Orleans close enough?

If so...Tulane Headache Center, Dr. Deborah Elliott. I would continue to seek local Neuro.

Sorry to hear you're in so deep. I second what Hooter said in regard to Meds.

Steve G

Title: Re: Help!!! I'm Not Living
Post by ozzman on Jul 21^st, 2003, 12:51pm

Screamer, sorry to her you're having a rough time. I have migraines from time to time (on top of, along with and in spite of my CHs). Spend some time reading around the board and best of all, the OUCH site. You are here among your peers. You are here surrounded by people that can relate 100% to your pain. You don't have to describe your pain, because we understand.

That understanding my friend, gives you the first shot of strength.

Going off the pain killers and just taking the what works for CHs, you have received another shot of strength. Incidentally CH medicine (abortives) do wonders for migraines.

Finally and most importantly, it is your family, your friends, your beatiful twins, people around you that very care for you, love you, and try to understand what you go through. That is a wonderful source of strength.

We (CHers) may get beaten, we may fall, but we don't give up. We cope, we adjust and we move on. Because this too shall pass.

PFDAN
Ozzy

Title: Re: Help!!! I'm Not Living
Post by taraann on Jul 21^st, 2003, 12:53pm

I have both migraines and episodic Clusters. I was diagnosed with migraines very young (16 i think) my mother got them and my sister gets them occasionally. I experienced my first cluster about 4 yrs ago .... was hospitalized for 3 days while they tried to figure it out and Overdosed me on morphine that wasn't even helping...I wasn't officially diagnosed until about a year ago but I was ill from other things at the time and that time in my life is very very foggy. So now I am learning all I can about CH's. I just experienced another cycle that is almost over (at least it seems to be) and my husband has been clueing me in as much as possible about what the nuero told me last year (my insurance doesn't cover him anymore so I'm seeing a GP who is just going on my old records)
Well that's my headache story in a nutshell....I don't get a headache every day thankfully and I'm very sorry about those that do. I have trouble handling them when I get them episodically so hats off to the strength of those of you who deal with this awful beast daily...ALWAYS REMEMBER YOU ARE THE STRONGEST AND MOST AMAZING PEOPLE IN THE WORLD!

Title: Re: Help!!! I'm Not Living
Post by cathy on Jul 21^st, 2003, 12:58pm

Screamer, check you IM and remember NOBODY gives up here, we just don't allow it. ;D

PF times to you my friend.

Cathy

Title: Re: Help!!! I'm Not Living
Post by Bob_Johnson on Jul 21^st, 2003, 1:02pm

1. Explore: www.headachedrugs.com. Web site of an excellent headache clinic in the Chicago area.

2. Get one of these books, immediately!

3. And some sources for locating headache doctors.

----
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

MIGRAINES AND OTHER HEADACHES, James W. Lance, M.D. (ca. $12 at Amazon) [Recommended by Geo, on 9/4/00.]

------------------------------------------------------------------------

PHYSICIANS--LOCATING HEADACHE SPECIALISTS

The National Headache Foundation, 1/888-643-5552, will send a list of doctors, by state, who have self-identified themselves as being interested and experienced in treating headache.
I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

www.HEADACHECARE.COM. See physician finder; limited listings.

WWW.ACHENET.ORG American Council for Headache Education.

Title: Re: Help!!! I'm Not Living
Post by kim on Jul 21^st, 2003, 1:10pm

Hey Sreamer,

I hear ya. Everyone above has posted the most important stuff. You are on a mission. To find what makes life more than existance.......
People worked very hard to help you achieve that .......please take the help.

Read EVERYTHING here. There is a list of cluster-smart docs throughout the country and beyone........check it out and start calling. YEARS of experience, research and knocking down barriers.......door WIDE open, stroll through .....it's a map...........GOTTA WALK THE WALK...........

Well wishes*********** :)

Title: Re: Help!!! I'm Not Living
Post by BillyJ. on Jul 21^st, 2003, 5:05pm

Hello!
sorry you had to come looking,but so glad you found
us.I get both also its not realy that uncommon.
Here is a place to look for a Dr. http://www.achenet.org/physicians/

NEVER give up!!Don't let the bastard win!!
PF2 All,
BillyJ